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Caregivers: You Are Not Alone!

Female healthcare worker holding hands of senior man at care home, focus on hands. Doctor helping old patient with Alzheimer's disease. Female carer holding hands of senior manMany family caregivers, as they navigate their way through the day-to-day challenges of being responsible for a loved one, discover the need to connect with others in similar situations, to share and understand their experiences with others. Often, family and friends cannot relate to what a caregiver is experiencing—the range of responsibilities, feeling overwhelmed, and absolutely needing some guidance and meaningful support in their caregiver journey.   

One of the silver linings to emerge from the pandemic, out of necessity, was the proliferation and establishment of virtual support groups. A long-time caregiver support group facilitator in our community who had to pivot to a virtual format (Zoom) was able to speak to the many benefits (the “pros,” as she sees it) of virtual support groups:

  • In-person support groups can be difficult to plan for and arrange, when the care receiver cannot be left alone in the home. There is no need to arrange for care for the care receiver. 
  • There are no worries about planning transportation to a meeting location.
  • Health concerns are eliminated if the caregiver and/or care receiver are immuno-compromised or have other chronic health or mobility concerns. 

Simply, it is “more convenient and efficient timewise” during the long, busy day of a primary caregiver to log onto a virtual support group meeting. It is her experience that people can still establish a meaningful rapport with other caregivers, and benefit from the advice, shared experiences, information, and peer and emotional support provided. In fact, according to AARP, “research has found that online/virtual support groups can provide the same positive effects as in-person groups when it comes to emotional support and validation”.

Family caregiver Joan J. related how, before the pandemic, it had been nearly impossible to get out to an in-person support group. Now that accessibility is not an issue, she has such “a sense of relief and connection” because of consistent, regularly scheduled virtual support group meetings. She feels she is to be able to share her feelings and hear from other caregivers in similar situations. She has found it validating on so many levels. She views the virtual support group as an entirely feasible opportunity for her to “meet with others in my same shoes,” with the same end benefit for her, to leave the meeting feeling uplifted and more confident, ready to face another day as a primary caregiver. Ultimately, Joan feels more knowledgeable and better equipped to face a range of issues and concerns, as they arise, related to caring for her mother, who has dementia.

Mary W. is a Seattle resident who is the caregiver for her husband, who has Parkinson’s. She has described a virtual support group for spouses that meets two times each month to be “a lifeline” as she faces the day-to-day challenges and realities of caring for her spouse with this progressive condition. 

“These are women who know where I’ve been, and where I am going, as a caregiver for my husband,” Mary said. She describes this spouse support group as a vital source of connection, advice, coping strategies, and planning advice, that can address for her what to expect with the various stages of Parkinson’s. “These are voices of experience, and I value their input,” she added.

Changing dynamics include behavior, mobility, medical treatments, medications, and hospital navigation. Mary’s support group helped her understand how to navigate a stay at the hospital and gave practical hands-on care tips and advice. One of the most profound realizations she has had over the course of meeting with this virtual support group: She is not alone. “We are in the same boat,” Mary says.  She no longer feels isolated and alone in her caregiving journey.  

Another observation from the long-time support group facilitator is that online support makes it easier to connect and find the “optimal group” for a family caregiver. Distance and location are no longer barriers. She sees more options for accessibility and targeted connections and for tailored caregiver support groups that focus on unique caregiving situations (for example, caring for a parent, a spouse, a sibling, or someone with a specific condition or diagnosis such as dementia, Multiple Sclerosis, Parkinson’s, Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig’s disease), stroke, traumatic brain injury, and other chronic conditions.

Virtual support groups can effectively meet the needs of a wide variety of caregivers. Caregivers feel a sense of community by sharing experiences and concerns with others who understand and relate to the specific and unique challenges and realities of caring for someone based on their relationship to the care receiver and/or a specific medical condition or diagnosis.

Camaraderie, friendships, emotional and peer support, a new perspective, and vital connections to others—these are just a few of the words used to describe the benefits of attending a virtual forum and a platform for supportive and understanding voices (and faces!) that you can meet with on a regular, much-needed basis. In often isolating circumstances, you can feel as though you are part of a genuine, positive community as you navigate your life as a loved one’s primary caregiver.

Kristine BroomeContributor Kristine Broome is a longtime caregiver support specialist at Aging and Disability Services, Seattle Human Services Department. To access local caregiver support and kinship care services, visit Community Living Connections or call toll-free 844-348-5464. Calls and consultations are professional, confidential, and free of charge.